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Room Projects
Mason is described as a loving soul who has a huge heart and a great sense of humor. He adores his three brothers and sister. He relates as a typical 6-year-old might, but without the ability to produce verbal feedback. He is using a Dynavox device to communicate and often uses sign language. With the funding and support from local individuals and businesses, volunteers, along with a local contractor have been able to create a healing environment: a private area for Mason, and space for his evening nurse to care for him. A sound-proof closet has been installed, a place where Mason’s loud equipment can be closed away from the peaceful environment. New walls have gone up, new windows have been installed, and the flooring has been replaced. The room is painted and decorated with the theme of Mason’s favorite children’s story, “Brother Bear.”
A Room to Heal chose Anna as a recipient of a healing environment – to move her from her crib located in the dining room and put her in a big girl (hospital) bed in a BRAND NEW bedroom. The room is themed around the favorite children’s book “Miss Spider” and is adorned with ladybug and garden decorations.
Many thanks go out to the volunteers who contributed their time and to the Johnson City Home Depot for their donation of carpet, supplies, and even a team of painters! Also to The Window Broker for their donation of new double hung windows that can be opened without allowing Scott to crawl through the screens, and to Olum's for their reduced rates on furniture for this room and many others in the past. As an effort to help Sean as he got well, volunteers from the local non-profit organization A Room to Heal, created a healing bedroom for Sean. Sean's older brother, Matt, generously traded his room with Sean to give him more space. HealthNow New York helped contribute financially to the room and some of their volunteers came and helped paint walls in Sean's favorite colors - orange and neon green! Beautiful masculine furniture was added to the room, along with a flat screen TV, a laptop computer and an old remote phone he requested. In addition, a Susan Kerr original painting hung saying "Standing Strong." Sean was very thrilled with his room, not knowing what to say, a bit shy. It was an amazing experience for all who were involved and it felt really good to provide such a wonderful space for this special teenager.
Stephen was referred to us by Carole Rosen, a Medicaid Benefits Coordinator who has known the family for 18 years. Steven has considerable challenges with a brittle bone condition, called Osteognesis Imperfecta, and is confined to a wheelchair. However, once we got to know him, we saw that his challenges are easily overcome by his contagious positive attitude, motivation and open personality.
In May 2007, 13-year-old Leon was diagnosed with cancer affecting his intestines and kidney. After numerous surgeries, the last, just before Christmas to reverse a colostomy, Leon is well on the road to recovery. We first met Leon just before Thanksgiving and were immediately drawn to his positive attitude and sharp wit. An army of volunteers invaded Leon's home and in 17 short days we raised the roof and built a second floor bedroom for Leon. The volunteers included Room to Heal board members, local builders,artists, family and friends. As much as the room was a gift to Leon, the privilege of spending time with the Koster family was a greater gift to the volunteers.
Aviano's Room - September 2007
Board members of A Room to Heal felt compelled to help. Our president solicited special funds from family and friends to raise enough to give Aviano what he wanted.
Macey was not able to attend 2nd grade and spent a lot of time at home, often very sick and in pain.
Thankfully Macey’s body responded well to treatment, and in September 2007, she was given a clean bill of health after a series of follow-up tests. Macey is now back in school and doing well. Luke's Room - November/December 2006
At the time we met Luke, he was once again going through treatment and was losing some mobility in his leg and arm. He was very brave.
This project was generously sponsored & funded by a local company, Professional Home Care. In September 2006, Laurie and Linda, co-founders of A Room to Heal, Inc. (ARtH) were approached by a case worker from CompassionNet, a branch of Excellus. Linda knew Amelia because she was also the case manager for her son Eric, when he was going through his bone marrow transplant a year earlier. Amelia was very supportive of A Room to Heal, Inc. and felt that one of her clients would really benefit from the organization. The only concern was that he did not live in Broome County and he was 20 years old, both issues outside of the “guidelines” of A Room to Heal, Inc. Jeremy was diagnosed with Hodgkins Lymphoma when he was 19 years old. He had two bone marrow transplants in Rochester and unfortunately, both were unsuccessful. Doctors fell that there are no more treatment options for him.
Jeremy was so grateful for his room and from that day forward moved back home. Sadly, we lost Jeremy in March of 2007. In his obituary, is stated, “Those wishing to remember Jeremy may do so with donations to A Room to Heal, Inc.” God bless this wonderful man. In early July 2006, we met the most wonderful family, who had the most “delicious” little girl: Lexi. Her room was our next project for A Room to Heal, Inc. Lexi is 9-years-old and lives in Endicott with her mother Nikki and her 12-year-old brother Anthony. She loves Aaron Carter and wants a beauty parlor room!
Two of our board members, Anne and Lynn stepped up and became project coordinators for Lexi’s room. Volunteers took measurements in the room, talked to Lexi and her family and began soliciting donations from local businesses.
Austin & Joey's Room - January 2006 Our first bedroom project was at the home of Austin, age 8 who was undergoing treatment for Leukemia, and his younger brother Joey, age 5 who suffers from seizures due to an inoperable mass on his brain. Many of us had the opportunity to participate in the first project, focusing on creating a healing environment for Austin and Joey, who share a room at their home in Conklin, NY.
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Eight-year-old Mason Markosky got a new room to make his life a whole lot easier. Because Mason was born at 26 weeks gestation, he has had multiple complications his whole life. A Room to Heal volunteers met with Mason and his family to create an adapted bedroom on the family home’s first floor, a room specifically designed for easy access and adjustable for Mason and his day and night caregivers. 
Mason has a tracheostomy and is 100% tube fed. He has scoliosis and he is small in stature. He has recently begun to walk on his own and is very proud! 
Alexander (Alex) is a 5 year-old kindergartener who lives with his parents and grandparents in Binghamton, NY. He has a very rare disease, Dyskeratosis Congenita (DC), that affects 1 in a million people worldwide.
Alex to spread out and be creative. The room includes a TV/entertainment area, a toy storage system and a large table for Alex to work on his creations and to do homework. The Star Wars theme is evident as you cant miss Yoda hovering on one of the walls. This project was made possible by the generosity of SEFCU, BAE Employee Service Fund, Rozen Foundation, many others donors who provided financial gifts and in-kind donations. A special thanks to the many volunteers who spent countless hours making Alex's wish a reality.
Anna is 2 years old and lives with her family in Binghamton, NY. Anna was born with Partial Trisomy 8P, a genetic disorder which affects her level of independence. Anna is fed intravenously, and has physical limitations and global delays. She has therapists who visit with her at home, and she also attends the Handicapped Children’s Association (HCA) twice a week. Anna has a lovely and contagious smile which can light up any room! 
With a generous financial sponsorship from the SEFCU Foundation, and the labor and amazing donations of supplies from Landmark Building & Design LLC, volunteers re-created Anna’s 1st-time-ever bedroom. The room was stripped and painted, a new handicap accessible doorway was constructed for easy access to the kitchen and bathroom, and a new window, lighting and carpeting were installed. Anna’s room consists of new furniture, including a medical table to make her procedures more comfortable, a homemade quilt, music and sound machine, new lighting and ceiling fan and a place for mom to organize all of Anna’s medical and feeding supplies.
Anna’s Room was completed on Friday, June 13th and family, friends and volunteers gathered for the ROOM REVEAL at 7pm that evening. We have never seen Anna so enthusiastic and stimulated as when her mother wheeled her into her new room. It was unbelievable! She looked around, smiled and was mesmerized by the room colors of yellow, red, white and black. Many close family and friends said that the new room was PERFECT for her, "it fit her to a tee!" Thank you so much to all of the volunteers that made a difference in the life of Anna and her family!
Scott Knapp is a sweet, lovable, 4-year old boy living with his Mom in Port Crane, NY. Scott loves many things that most 4-year-old boys do, but Scott suffers from an extremely rare seizure disorder called Dravet's Syndrome. Scott started having seizures when he was only a few months old, and he continues to have multiple seizures every week. Seizures can sometimes be triggered by things such as light, temperature extremes, and commotion. Scott's condition is complicated by asthma and respiratory disorders. As a result of the Dravet's Syndrome, Scott's cognitive and motor skills have been declining and he struggles to communicate and focus his attention. Scott requires constant supervision. 
With help of some ideas from Scott's physical and speech therapists, A Room to Heal was able to provide Scott with a safe healing environment where he can play and continue to work on his physical strength and practice his communication while at home. Scott's new room includes soft rope lighting, a ceiling fan and window air conditioner to control temperature, a special velcro board to help Scott maintain his vocabulary, and a board full of light switches, buttons (Scott's favorite!), and knobs to keep Scott occupied and divert him from the real ones! A soothing fish tank set up high ads to the calming effect of the room, along with a television mounted with cords (another of Scott's favorites) well out of reach. 
Sean Shumaker is a senior at Chenango Valley High School. In 1998, at the age of 10, Sean became one of six children diagnosed with cancer in the Binghamton suburb of Hillcrest. In 2007, he celebrated his 7-
year cancer free milestone. But in December 14th, 2007, Sean was
diagnosed with a brain tumor, a direct effect of the radiation he had in 2000 as part of his leukemia treatment. Although the tumor was removed at Duke last month, Sean had to undergo chemotherapy and radiation treatments each day, for 6 weeks, at Upstate Medical University Hospital in Syracuse, an effort to make him well again.
Stephen Krome is 18 years old and lives in Johnson City with his Mom and Dad, sister & brother. Stephen enjoys video games, watching sports and the time he gets to spend with his family and german shepherd, Seneca. 
A Room to Heal volunteers, assisted by the Helping Hands organization from St. James Catholic Church, were able to create Stephen’s dream room and bathroom. The Krome’s home, having been affected by the flooding in 2006 was in dire need of a bathroom for Stephen, which was never completed. A Room to Heal’s team of volunteers were able to create the convenience of a full bath for Stephen’s special needs. 
Many local organizations and families contributed time, products, monetary donations and services to create this room for Stephen. The room was painted in a soothing moss green, with matching modern bedspread and lovely painting by Susan Kerr. The oak bed, frame and mattress set were generously donated by Ellis Brothers, along with amazing contributions by the Visram Family, Lowes, Olums and Raymour & Flanigan. The local family of Paul Huff from Huff Ice Cream helped round out the “sports theme” room with a Peyton Manning Fathead that came to life in the room. 
Stephen lit up when he finally got to view the special room that so many shared in his love to create. He gave a heartwarming testament to the local news team and surprised his mom with his graciousness and eloquence. We wish Stephen all the best in health, happiness and his completion of his education at Johnson City High School and as he ventures out to live his dreams. 
He shared a bedroom with younger brother Donnie, but it was clear he needed a bedroom of his own. After meeting with Leon and his family, we agreed upon a very aggressive project to create a new room for Leon. 
Leon's Room reveal was just before Christmas and several days after he returned home from the hospital. Painted in his favorite color, sky blue, his room was fully appointed with new furniture and all the essentials such as an X-box and flat panel TV, a Susan Kerr original adorning the wall and a Jon Ed Bon Fed caricature of Leon and "Snowflake", Leon's trusty companion. A spectacular room for a very special boy. The room was generously sponsored and funded by the Community Service Fund at BAE Systems in Westover.
Ayana is a 7-year-old little girl who lives in Syracuse, NY with her mother, her 12-year-old brother and 5-year-old sister. At 4, Ayana was diagnosed with Xeroderma Pigmentosa, a genetic disease with such extraordinary sensitivity to sunlight that ordinary sun exposure results in the development of skin carcinoma as a very early age. Children with “XP” are sometimes termed “children of the night” as they can only play outdoors safely after nightfall. Ayana’s family situation is what many of us would term as “unacceptable, ” so needs were identified very easily. Volunteers from A Room to Heal and friends were able to secure “special” funding, donations and volunteers from the Syracuse area to create a wonderful new bedroom for Ayana and her sister. The room was decorated with a Disney Princess theme and needed new paint, new lighting, new carpeting, two twin beds, mattresses, dresser and night stands. A new DVD player was donated, especially for Ayana since she often cannot attend school because of severe Asthma attacks. 
Four year old Logan from Owego, NY was diagnosed with a Germ Cell Tumor in May of 2007. After a very intense summer of chemotherapy treatments and a surgery, he is in remission. Logan is a wonderful little boy, very caring and very funny. His smile lights up a room. He has begun Pre-K and has made some new best friends. We are all thankful for how well he is doing. 
In October 2007, Logan loves motorcycles and got an amazing new room. Volunteers and friends came to work on his room, as well as a crew from the local company Lockheed Martin. 
In July 2007, A Room to Heal was approached by a CompassionNet Case Manager in the Utica area. She was working with a 12 year old boy who was diagnosed with Rhabdomyosarcoma and was dying. Aviano's mother had shared that they were in the process of redoing his room before he became sick and now there just isn't time to work on it because the attention is needed with his illness. He was not even living in his room at the time. 
Volunteers spent a Saturday priming, painting and setting up a new room for Aviano. Unfortunately he was unable to enjoy the room as much he would have liked, but the experience brought him much joy and made him feel very special during his last days with his family.
In December 2006, 7 -year-old Macey King was diagnosed with Ewings Sarcoma cancer. She was treated in Syracuse at The Center for Childhood Cancer and Blood Disorders at Upstate Medical University Hospital. Macey lives in Vestal with her parents and four brothers. 
Because Macey and her family spend a lot of time together, the family room was selected as the healing environment. Volunteers with A Room to Heal, Inc. were thrilled and moved by what they were able to create for the King Family. At the end of May 2007, Macey's got to see her new room, equipped with a foosball table, big screen TV and a stage. Macey broke out in song singing "The sun will come out tomorrow". There was not a dry eye in the house. 
Luke Zuber is a 13 year old middle school student in Maine, New York. He was diagnosed with a brain tumor when he was three and underwent successful treatment at Boston’s Children’s Hospital. The tumor was gone… until this past year. 
In Luke's home, we created a recreational room as a healing environment for he and his brother. The room was made from scratch in a section of the garage -- dry wall, ceiling, & carpeting were installed. It was equipped with a game table, TV, game chairs and an XBox 360. One of Luke's favorite touches was the caricatures of he and his brother, done by our very own local talent Jon Ed Bon Fed. 
After careful consideration from the ARtH board and the fact that Excellus would be donating $3,000 for the completion of the room, the project was accepted. With Amelia’s advisement and request from the family, only two members of our organization went to work on the room. However, family and friends of Jeremy’s family all pitched in over one weekend, not only working on Jeremy’s room, but also cleaning and re-creating a comfortable environment throughout the entire Hadley home.
Over the course of a weekend, Jeremy’s room was transformed into a bedroom suite. It was cleaned from top to bottom. The walls were painted, carpeting put in, a new king-sized bed for Jeremy’s comfort, a sofa and comfortable chairs for visitors, serene lighting, a TV and DVD system… we even framed the sports car posters he so much loved. In addition, Jeremy’s bathroom got a total makeover by Amelia and other volunteers.
(see notes from Jeremy and his family in the 
Lexi has been in treatment since she’s been 3 months old. Her brain stopped forming at 6 months of pregnancy. They think she may have been exposed to chicken pox in utero which may have caused brain and nerve damage. When she was born, she had shakes and seizures. She has a very low immune system and is therefore home-schooled (she can't be in a close classroom with other children). Mom says the doctors think it is 
A reporter from FOX 40, Racquel Asa wanted to do the room project story, from start to finish. Racquel fell in love with Lexi as much as the rest of us.
What transformed was amazing! Volunteers worked tirelessly creating a beauty parlor room for Lexi, with all of her favorite things. Beautiful drapes covered the closet, a cool girlie border lined the top of the walls which were painted a soothing warm pink, a soothing ceiling fan helped to circulate air in her room. Her new room also included, white wood furniture, a vanity table and bench, lots of beauty products including a mannequin head for Lexi to practice on, and extremely artistic wall murals done by a local volunteer. In addition, a hand railing was put onto the stairway railing leading up to Lexi’s room and an air filter system was put into Lexi’s room, all to help with her ongoing health issues.
Lexi enjoyed some special trips during the week her room was being done. Her mother and brother, along with her nurse joined Jennifer O’Brien from the Magic Paintbrush Project and while they created beautiful works of art, they got some cherished family time and art therapy. Later in the week, more volunteers took Lexi and her friend for the day to an amazing children’s salon, Kadoozies: they got their nails and hair done, had a party, and went shopping at Target to buy a new outfit! Jon Bon Fed, the famous local caricaturist came to Lexi’s home, visited, made everyone laugh, and drew caricatures of Lexi and her brother.
Lexi had so much fun cutting the “Do Not Enter” tape as she opened the door to her new room. She was so happy, jumping around, laying on her new bed with comfy new linens, and walking around just inspecting everything. She immediately started opening the beauty product gift baskets and started to apply make-up to one of the mannequin heads. Lexi and her family were so thankful for everything and a very special relationship was formed during this project.
Volunteers with A Room to Heal spent 5 days working diligently to get the room ready for the boys. The boys were beyond thrilled as they entered their new room one Saturday afternoon, after much anticipation. Austin and Joey gleamed as their eyes traveled across their “healing” bedroom filled with their favorite things! Calming walls the color of a crisp blue sky covered the room & wall murals of fighter jets about to land on their new “runway” desks created much excitement. 
To match, the new ceiling fan was a moving jet flying over their heads, and their new, comfortable bedding was as soft as ever! The brothers will be able to spend time in their room, on those bad days, and feel like they are in a special place. They’ll be able to make paper airplanes, listen to the sounds of nature, read stories and watch movies on their brand new TV. They’ll be able to block out the sun when they aren’t feeling so good by using the shading and window treatments they did not have before. The new carpet will provide a soft, cushy feeling under their little boy toes. 
Hopefully, you have begun to imagine how special this was for us as the givers. There is nothing like the feeling of helping someone else. There is nothing like the excited expression on a child’s face, or, for that matter, the feeling of gratitude when looking at the tears in their parents’ eyes. It was a remarkable experience and we are thrilled that you will be taking this “ride” with us.